The Value of Participatory Research: AASPIRE's Autistic Burnout Study | Organization for Autism Research

Perspective

I have a unique position as both an autism researcher and a member of the Autistic community. I co-founded and co-direct the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) along with my colleague, Christina Nicolaidis. AASPIRE is a long running — 14 years now! — community-based participatory research (CBPR) partnership between academic researchers and the community of adults who identify as being on the autism spectrum. Like AASPIRE as a whole, I have one foot in the world of academic research, one foot in the world of autistic self-advocacy, and I do my best to bridge them.

As the co-founder of the first documented CBPR collaborative with the Autistic community, I talk a lot about why it’s important for researchers to form equitable partnerships with the communities where they conduct research — and also why it’s important for communities to reach out to researchers to better have their needs and priorities met. I could write pages of geeky reasons for why authentic and equitable academic-community research partnerships are important, but I can summarize them into three main points.

First, autism research affects the quality of autistic people’s lives. This could be very directly; for example, developing and testing an intervention could have either helpful or hurtful outcomes. But it could be indirectly too; for example, perpetuating — or disproving — a false stereotype about autism could have ripple effects on how we’re treated.

Second, we affect the quality of autism research. If autistic research participants don’t wish to cooperate, don’t understand the study instructions, or find the research questions or materials irrelevant, unethical, or offensive, then that will impact recruitment and the quality of the data collected. Community involvement could be the difference between a successful intervention and one that failed to understand what we even wanted in the first place.

Third, authentic, equitable partnerships matter because collaborating can lead to positive change. Well-constructed studies that answer research questions the Autistic community values can lead to high-quality research, which positively affects autistic people’s lives.

 

Authentic, Equitable Collaboration

An example of the value of academic-community research partnership is AASPIRE’s recent study to understand, define, and develop a measure of autistic burnout. This is the definition that came from our research: Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically three+ months) exhaustion, loss of function, and reduced tolerance to stimulus. The video of a talk I did for the NJ Autism Center of Excellence provides more information about what autistic burnout is, its impacts, and strategies to deal with it.

Autistic burnout is something that autistic people have talked about for decades. We have described it in urgent terms and attributed it to loss of work, skills, health, relationships, and quality of life. We have urgently asked for the research and clinical communities to address it. Yet, there were no papers in the published scientific literature that investigated it. The only papers on “autism” and “burnout” were related to caregiver burnout. Researchers who don’t have contact with the community of autistic adults weren’t hearing about autistic burnout. Or, if they had heard about it, they did not feel it was important to study. Because of our partnership, the academics in AASPIRE — myself included — knew that this was an important area for investigation. If we can better understand autistic burnout and what to do about it, there could be less suffering.

We developed our research materials collaboratively with the community using our CBPR processes and our processes for creating accessible instruments. This helped us create a research design and materials that study participants trusted and that were accessible to them, which, in turn, made recruitment easier. For the first phase of the study, to understand autistic burnout, we were able to fill our qualitative sample in about a week, with many more people asking to participate than we had slots for. This response helped us get rich personal interview data that enabled us to understand autistic burnout in depth.

The study as a whole got substantial support from participants and others who heard about it; we had multiple contacts from people asking how they could help. For our second phase to develop and test a measure of autistic burnout, we got good, clean survey data with no missing data points, grateful feedback from survey participants, and a strong member check1 on our qualitative findings.

As far as positive change, we are still early in this line of research. However, some evidence of the impact is already evident. When Reddit science featured our paper, it received 46.5K upvotes and 1.7K comments that were overwhelmingly supportive, grateful, and excited that researchers were finally looking into this issue. The paper received over 150K downloads in June alone. The paper includes a qualitative synthesis of strategies that autistic people found helpful in reducing autistic burnout. Nearly every week, I receive grateful communications from autistic people and their family members, either for scientifically showing that their experience is real or for helping them find strategies to potentially help. We hope that other researchers, clinicians, and community-academic collaborations expand on our work and use it to improve people’s lives.

I’ve been conducting CBPR with the autistic and other mental health and developmental disabilities communities for almost 15 years now. Authentic, equitable collaborations are critically important because autism research impacts our lives, we impact the quality of autism research, and both together can lead to more positive change in the world. Our use of a CBPR approach not only gave us a good idea for a research study, but it also enabled us to really listen to the community’s passion for a topic that might not have seemed as important if we were just looking at existing research and clinical understandings. The importance of the topic to the community is evident in the large, positive response to our findings. I strongly encourage researchers to seek out and grow authentic partnerships with autistic people, and autistic people to seek out researchers who are willing and able to authentically include them. AASPIRE has resources in our online inclusion toolkit to help.

1 “Member checking” is a kind of verification of findings for qualitative research where study participants, or people who have had experiences like the study participants, check to see how much they agree with the way that the researchers interpreted their data.


Dora Raymaker, Ph.D., is a research assistant professor at Portland State University’s Regional Research Institute, co-director of AASPIRE, associate editor of Autism in Adulthood, a member of OAR’s Scientific Council, and Autistic. Their research interests include community-engaged practice, systems thinking, measurement adaptation, and dynamics at the intersection of science, society, and public policy. In application, Dr. Raymaker conducts intervention and services research in collaboration with disability and mental health communities to improve health, well-being, employment, and self-determination, and reduce stigma. Dr. Raymaker also writes fiction with neurodivergent heroes, including the science fiction mystery novel, Hoshi and the Red City Circuit.


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